“I am
alive and well and unconcerned about the rumors of my death. But if I were
dead, I would be the last to know.”
―
I don’t even know where to begin.
My last update and post were in March of 2021. So, this is NOT going to be a short post, and
to those looking forward to that, I apologize.
But before we go on, I want to let everyone know that I am doing
fine.
In December of 2020 I stopped one of the two drugs I was taking because I was doing so well. I was hoping for a long remission. That lasted exactly 4 months. In April 2020 they ran a very sophisticated test that looks for CLL in a million cells. Up to that point they had only looked at 1 in 100,000. And lurking in the background, they found some CLL cells. Not enough to cause great concern, but enough to know that I would be progressing once again. As with most things CLL, I had some time to decide on what to do. I would have loved to have entered another clinical trial, but there were very few options open to me and those that I may have considered required quite a bit of traveling to the East Coast. So, I just waited. Everything really progressed slowly until September, and then things started taking off. Once again, I was forced into making another treatment decision. Based on my previous success with the drug I stopped in December 2020, it was decided to add that drug back into the mix.
So, I re-started
the drug at the end of October. This is
now my 7th course of treatment over my almost 22 years living with
CLL. At the end of four weeks on the
additional drug, I was responding again.
So now, five months out, all of
my numbers are in normal range once again, and the sophisticated test they run
to show HOW MUCH CLL is still there now shows only about 1.7%, which tells us
that I am responding pretty well to being back on the drug. The bigger question is how long will this
last? And that is a question that no one
knows the answer to. In planning for my
next steps, I have been talking to all of my CLL doctors (I actually have 3)
getting them to weigh in on what my next treatment plan should be. Right now, there are really no really good
off the shelf treatments. There are a
couple of things that MAY work, but no clear-cut winners. The hope is that restarting this drug will
give me a couple of years, and by that time there will be another ‘next greatest
thing’ out there that can take care of me.
So really, I am just kicking the can down the road.
In the first week of the new drug ramp up (which takes 5
weeks) I suffered a ruptured calf muscle.
Ouch…. It was not a great
experience. I was basically bed ridden
for almost 2 weeks. I could not go up
the stairs. I went to Urgent Care twice,
went to the ER once, had TWO ultrasounds (to check for blood clots), one Xray
(to check for broken bones) and 2 visits to the orthopedic doctor. All of this while wearing a boot, using a
walker or a cane. You really don’t
appreciate being able to walk, until you can’t (can you confirm this, Rick?). I finally got back to normal, and on the
upside, I can still walk 18 holes of golf.
If that was all that was happening, I could stop there,
but……Being a male over 70, I have had my PSA checked on a regular basis. It has been slowly going up, but not
alarmingly high. That all changed around
March of 2021 when it almost doubled. At
the suggestion of my urologist, I had a MRI, that indicated that there were
lesions that were suspicious. Based on
that, I had a prostate biopsy. The
initial results confirmed that I did have prostate cancer, two of the cores
were low grade and one was intermediate grade.
With that news, I started my research on what to do. I saw 4 different prostate specialists at
major medical centers. I compiled all
the data I could, learning from my CLL journey that information is power. I looked at different treatment options, and
was this close to making a decision on how I was going to treat it. But wait….it gets better. Another test that was suggested was the
DECIPHER test, which measures the aggressiveness of the cancer. The results were interesting, they came back
on the lower end of the scale, which usually means the cancer is not that agressive and usually will not
metastasize to other parts of the body. One of the doctors had suggested that
he was not completely comfortable with the biopsy analysis (which was actually
done by his medical center pathologists) and he suggested that we send my
slides to the world prostate expert at Johns Hopkins for his review. In researching prostate cancer, this was a
very common suggestion, and one I was going to ask for anyway. Four weeks later I got the results back from
them. There is bad news, and REALLY good
news. You ask, ‘how can that be?’. In analyzing the slides they came back with 4
cores that had cancer instead of 3, BUT…..none of the 4 were intermediate, and
they all were low grade. This really
turns things around, and the overwhelming recommendation is that I go on Active
Surveillance, and we just watch the PSA and do another MRI in 2022. This was a huge relief because this was all
happening at the same time, I was going to have to modify my CLL treatment
plan, which would have made it more complicated. What I have learned in dealing with my CLL is
to educate yourself as much as you can, don’t make hasty decisions without all
the information. If I had not gone the
extra step in analyzing my prostate situation, I would have had treatment a
week after my biopsy, but instead, I am able to wait and see how it progresses
with not much of a downside.
But all that aside, there has been cause for joy in the last
year. In February, our youngest daughter
and husband gave us our 12th grandchild, Chet Daniel. We were fortunate to be able to spend some time
with her and her family before, during and after the birth.
All of this was happening at the same time we were doing a major remodel on our kitchen and family room. We started that project in June of 2021 and we were 97% done until last week. We then sprung a water leak that covered parts of our newly finished wood floor, parts of a cabinet and walls. We were so blessed that we were home when this happened because we had been in Arizona for a month in February, and I don’t even want to think about what our house would have looked like if it had gone unchecked for that long. They are now in the process of putting it back together, and who knows how long it will take to get it back to the way it was.
I have learned not to hold my breath on construction related issues. Based on our project, I can tell you every excuse in the book for delaying work. Supply chain issues, I have COVID, my guy got COVID, I can't get the permit because City Hall is closed because of COVID, I have a vacation planned, we have to let that sit for a week, my truck broke down, I didn’t put THAT in the estimate, I can’t get the product until you give me a check, and my guy is on another job and we ran into problems.
This month also marks the end of an era for me as I have
stepped down from the Board of Directors of the Long Beach City Employees
Federal Credit Union. After serving as a
volunteer for over 30 years, I felt that the timing was right for me to allow
others to step into this role. I was my
pleasure to serve all of those years, and it not only enriched me personally,
but educated me financially.
“And, in the End”….I feel very blessed. I am getting to see our children become great
parents and our grandchildren grow up.
And in May, I get to write off another item on my bucket list, seeing
Paul McCartney in concert.
TE
